Living with Fibromyalgia

There are many mornings when I wake up too sore and too tired to attempt what I know will be helpful for myself, or my family. Get up and move, I tell myself. But my fibromyalgia, complicated by IBS, chronic fatigue, anxiety, and depression, get in the way.

If you have ever struggled to wake after being sedated for surgery, that is what my routine feels like most mornings. If you have ever swum to deep and experienced that fear that you may not break through the water’s surface in time to take a breath, that is what waking up with fibromyalgia feels like for me. I am not yet 40 years old, I have two children, a husband, and a part-time job teaching elementary art, which equates to a full-time job with all of the prepping and planning. I have to fight every day to open my eyes and take that single step out of bed.

The emotions easily settle in. First, there is the guilt. The guilt for being sick, for feeling down, and for all of the people my condition affects. Then, there is the shame, because what type of person can’t pull it together enough to just get out of bed? It’s hard to explain that I probably spend 80% of my energy just trying to appear “normal”—to get up, to be a great mom, to do my best as a wife, sister, daughter, and teacher. Just a few years ago, I had ambitious but realistic plans for what I would look like in each of these categories, and I am falling short of my goals in all of them.

Once a week I set up all my medications for the day. I have three different weekly pillboxes, one for morning, lunch, and evening. Every time, I recall the days I used to spend with my grandmother. I think of her wrinkled hands in her dimly lit kitchen, her sad demeanor...having to take so many pills just to get through one day. I have to take a variety of medications and supplements just to be “well-ish” and I hate them. I hate the way they feel, the way they taste, their side effects, and the way they take up a whole drawer in my bedroom and space in my fridge. I hate how they do not do a great job of easing my pain, or any of the symptoms of my IBS, fatigue, anxiety, and depression—all of which are on the endless list of complications that are common with those who struggle with fibromyalgia. And yet, if I forget to take them, I feel even worse.

Beyond the day-to-day, I spend two to three hours a week with doctors trying to stay in front of “it.” Trying to fit in time to manage my conditions takes up a chunk of time I’d prefer to spend walking or reading with my children, cooking dinner for my family, getting my work done, or just being me.

Perhaps the worst part of living with fibromyalgia is trying to share how I feel with those closest to me. I always find the responses fascinating. For example: “Geez, how could you forget to take your medicine?” My thought: because it is so very depressing and humiliating to set up day after day. “I know someone who had fibro—she was on the same medicine, then stopped taking it, and then committed suicide.” My thought: Awesome sauce. Fan-spankin-tastic. “Have you tried to stop eating gluten, dairy, sugar, nightshades, greens…” My thought: Why, yes, I have. I am now subsisting solely on paper. “My ankles hurt too, sometimes for no rhyme or reason.” My thought: Oh, right, why am I complaining. Everyone feels the same way I do. “Have you tried prayer, scriptures, or faith?” My thought: This suggestion probably hurts the most as I consider myself a deeply spiritual person.

While they mean well, my friends and family don’t understand that, sometimes, I feel as though I am literally walking through quicksand. I can no longer coach soccer, or garden, or take Zumba classes with my daughter—all things I used to love. On one of the few occasions that I have tried to exercise again, I struggled to lift my leg half-way through; no matter how hard I told my brain to move, my body failed me. It is such a shocking feeling to lose control over my body that I often feel like I’m in a dream. I never know when my joints and nerves are going to scream out in punishment for the same activity I have been doing successfully for weeks, wrecking any esteem I had built.

Even among all of this, however, I am grateful for what I have and what I had. I try to remember the person I was before I became my condition, but I try not to wish too badly to be her again.

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